Hi, I'm 18 and have been going through a difficult year or so due to what I believe to Lupus. I got a blood test today and must wait 10 or so days before I can be seen by a doctor. I was hoping if I shared my story and symptoms that some members of this forum who know more about Lupus may be able to help.
After leaving a foster home where I was being treated badly and being put under extreme stress by the people I lived with I was prescribed anti-depressants by my doctor and they didn't work out well. I came off them after about six months of use and went through horrible withdrawal. A few months after the withdrawal ended I began to get really sick. I felt weak all the time and dizzy, but this subsided and I got better. Then a few months later I got sick again, it felt like the flu. I was again weak and dizzy, but I felt strange mentally. I could not sleep even though my body was aching and sore and I felt mentally drained. I also felt as if I was bipolar, going through a phase of mania. I was constantly up and going and never felt the need to sleep. This went away after a few weeks and I was fine again. The next two months I was my usual self again and felt alright other than fatigue and body aches, but every now and then I would have phases of complete restlessness.
A few days before New Years Eve this year I had gotten very ill. I felt like I had the worst flu I had ever had. I just assumed this was due to the cold weather and normal flu that many people get during the holidays. But, then it got strange. I began getting extremely painful headaches, which was odd because I never have headaches. I was also very paranoid and anxious. So, for about two weeks I was having these extreme headaches every few hours that advil, tylenol or motrin just would not ease. I also began seeing flashes of lights, spots and shadows and not sleeping for more than two hours. My mom told me this may be an aura migraine, but it should not last this long. I was very scared. It has gotten a bit better, as the flu-like symptoms have subsided, but the headaches are still very bad and they are now accompanied by weakness to the point where I need to sit often because I feel as though I may pass out, ulcer or blister type things in my nostrils, sore muscles, body aches, numbness in my hands, legs, fingers and toes, sleeping much more but awaking feel as though I have sleep apnea and can't breathe, petechiae on one of my shoulders, chest pain, a slight rash/redness on my face, not urinating often, getting overly warm and overly cold at different times of the day, abdominal pain, extreme sensitivity to any type of light, and pains in the veins in my hands. It has been very overwhelming.
I have also noticed that I feel alright when I first wake up, maybe just a bit tired, but as the day goes on I feel as though my brain and body break down. I begin to get the headaches which causes me to see shadows, spots, etc and get really weak. By the time I arrive home, my boyfriend needs to assist me to get undressed because I am so dizzy and unsteady. This usually happens around 4 pm. I feel mentally strange the longer I am out in the sun. I just don't feel like myself and then I get paranoid because I am so worried.
I'm sorry for it being so long, but I just want some help. I feel too young to be dealing with these problems and no one seems to understand. I have talked to my doctor about these symptoms briefly which prompted a blood test for lupus, rheaumatoid arthritis, and thyroid problems. But I am worried she will assume I am a hypochondriac if I tell her everything. I have been to the hospital a few times, but they never take me seriously and seem to push me aside. I would truly appreciate it if someone could tell me if my story and symptoms sound similar to their experience in being diagnosed with lupus.
Hi and welcome! Because lupus overlaps so much with other conditions, one might say, "This looks like lupus", then it could turn out to be something else entirely. That's why it's good you saw a rhemuatologist to be evaluated for lupus & similar conditions, thyroid, etc.
You can read the 11 criteria for systemic lupus (SLE) in one of the "sticky posts" (permanent info posts) located above the user threads. Generally (not always), you must meet 4 or more of the 11, not necessarily simultaneously, meaning they may be met over time.
I'm only a patient, but offhand several things you list *seem* possibly close to some criteria. Maybe butterfly rash. Maybe sun sensitivity. Maybe oral/nasal ulcerations. Maybe arthritis. Maybe serositis (inflammation of lining of heart &/or lungs). But only a doctor could say for sure.
You'll see that 3 criteria are about labs. The rheumie hopefully ran all these, and more, actually. (There are many autoantibodies seen in lupus, more than appear on the criteria list. And "close cousins" to lupus share some of the same autoantibodies &/or have some of their very own.) BTW, when your labs come back, you should ask for copies.
The other "stickies" have useful info, too.
Not urinating often is something to tell your doctors bluntly & loudly. I bet there are many possible causes, but it's not something to ignore or hide.
I had episodic problems from childhood that took years to crystallize into a milder form of SLE. Pain, fatigue, low-grade fever, hair loss, weight loss, depressed WBC, elevated ESR, migraines, B-12 anemia, prolonged periodic bleeding, neuro-like tingling, and chronic GI problems. Last, a photosensitive nonscarring lupus rash diagnosed as SCLE (not the discoid or malar rashes you see in the criteria). Anti-Ro & anti-La autoantibodies were found. Dx: subacute (mild side) SLE. I take Plaquenil and avoid sun.
I hope this gets you started, that others add more, and that your labs come back with really useful info. Hang tough, OK? If this does turn out to be lupus, with proper diagnosis, treatment and followup, in this day & age many patients are able to lead pretty normal lives. Anyway, I'm glad you found us & hope you post whenever the mood strikes. Hugs, Vee
P.S. Some meds, including certain antidepressants, can trigger flares in people with lupus, or induce a form of lupus in susceptible people called DILE (drug-induced lupus erythematosus). So you should make sure your dr. knows your timeline of meds & symptoms. You could maintaining a timeline until you get answers & help. Short & sweet & punchy is best, like a bulleted list with sentence fragments.